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-- Proverbs 11:25
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"I came here to chew bubblegum and kick ass. And I'm all out of bubblegum." -- "Rowdy" Roddy Piper (1954-2015), They Live
Wednesday, September 11, 2013

Dispatch from Casa la Brilliant
Posted by Jill | 10:33 PM
It's been quite a whirlwind here at Casa la Brilliant lo these last few months. I've been working 7 days a week trying, mostly in vain, to keep caught up at work. Mr. Brilliant underwent three rounds of chemo with relatively few side effects, given the massive doses he was given. Sure, he felt lousy for three days after the last dose, and he lost most of his hair, but he's been quite the trouper and a relatively good sport about the whole thing...and when you're anticipating bouts of retching nausea and cachexia, he came through it pretty well....until the day during the July heat wave when he collapsed coming out of the bathroom, hitting his head on the wall on the way to the floor. And of course this happened while I wasn't home.

A day later he finally got around to telling me, and three days later, when I became alarmed because he was not having his usual perk-up, I called Big Cancer Center where he's getting treated and they insisted he go to the emergency room, where they stuck him full of needles, brought in lots of machines that go "PING!", hot and cold running nurses, and finally, medical techs that rushed him upstairs for a CT scan of the head, because when you a) fall, b) hit your head, and c) have good insurance, and d) the hospital just opened in June and has almost no patients, you get lots and lots of procedures and tests.

After the MRI, the nurse practitioner comes in and asks, "So when did you have your stroke?"


Turns out that the CT scan showed evidence of "an old infarction", which basically means a stroke sometime between birth and about a month ago. Who knew? Anyway, they admit him for observation at the concurrence of his oncologist, and for 24 hours they stick him full of needles every few hours, do a cardiac ultrasound, stick him with more needles, send in two giggling physical therapists whom he promptly dismisses, and then stick more needles in him...and then the next day they do a brain MRI, and in the afternoon, a neurologist comes in and says "You look like Jack Nicholson." Now, Mr. Brilliant looks nothing like Jack Nicholson, except that there are some people, including some family members, who think he does. Other people have said he looks like Rich Little or Jim Carrey, and my mother used to say he looks like Tim Robbins, which he doesn't either. But Jack Nicholson is a relatively cool dude, so Mr. B. decides to be a good sport about doing a bunch of silly bedside tests designed to measure his level of infirmity -- except he doesn't have one. He passes the neuro test with flying colors in a game of "Stump the Chump", which is what the neurologist is now feeling like. After much hue and cry and tantruming by both Mr. B. and me, they finally realize that this particular gravy train is bound and determined to leave the station, and they let him go home, where there is already a message from the oncologist, saying she wants him to see Big Cancer Center's neurologist.

So off we got to see Dr. Brain Doctor from Big Cancer Center, who also can't make heads or tails of what is going on with Mr. Brilliant's scans. There is clearly evidence of a stroke, and apparently a pretty significant one, and yet here is this guy walking in on his own, passing every cognitive test with flying colors, pushing him away and pulling him with what you'd expect from someone who took up Shaolin kung-fu at the age of 48, and topping everything off with an unsolicited resounding chorus of the Announcer's Test. Dr. Brain Doctor from Big Cancer Center is an endearingly nerdy sort -- the kind of guy who thinks out loud and whose mind is halfway down the road by the time he gets his sentences out. And he admits he's stumped, wants another scan (because Big Cancer Center's machines that go "PING!" have magic Lil BUB Amazing Space Cat dust on them or something, or because we have very good insurance), so we make another appointment to have yet another scan.

Meanwhile, Dr. Oncologist consults with Jolly Jovial Oncologist at Big Cancer Headquarters and they decide that Mr. B. has to stop chemo until they determine what's going on, because it turns out that one of the chemo drugs carries a high risk of stroke. So now Mr. B. is facing radical cystectomy sooner rather than later, and we are both starting to freak out, becaue neither of us is psychologically ready to deal with surgery.

But wait, there's more!

So we go for the scan, and have a Top Secret (read: unbilled) consult with Dr. Brain Doctor from Big Cancer Center, who tells us that three radiologists have looked at his scan, and all agreed that what he has is moyamoya.

My response: "You're joking, right? What the fuck is moyamoya?" And yes, that is exactly what I say. It seems that neurology students learn about this in medical school, and then promptly forget about it because it is so rare. I won't take up blog space with a detailed definition, but here's a good place to start. We always knew that Mr. Brilliant's brain, like mine, is a strange and wondrous place, and now we have proof. But Dr. Endearingly Nerdy Brain Doctor doesn't care about the Jean Shepherd rants that are stored in it, or the memories of Gary Stevens and the Wooleyburger on WMCA, or the precepts of the Church of the Subgenius, or the entire sides of Firesign Theatre albums that are still housed therein, never mind that Mr. B. can still fix just about any PC problem you may have; he just wants us to see a stroke neurologist at Big Prestigious Hospital Affiliated with a Medical School.

So after more scans, or Tumor Assessment at End of Treatment, as we in the oncology biz call it, off we go for a fun day of first seeing the urosurgeon at Big Cancer Center, followed by enjoyment of a pushcart felafel, followed by Dr. Strokes "r" Us. The urosurgeon, a kindly man who is one of the top guys in the city and yet has somehow managed to avoid becoming an asshole, makes Mr. B's day by a) telling us that the scans show NO evidence of tumor and NO adenopathy in the pelvic lymph nodes and NO evidence of metastasis, which means a complete response to even the shortened regimen; and b) telling him that because of this moyamoya issue, surgery is out of the question, and they will do radiation instead, with a very low dose of the OTHER chemo drug, which does not carry risk of stroke but which makes him have trouble breathing so they have to shoot him up with Benadryl as a premedication. Mr. Brilliant is practically weeping with joy, because this means he is on the bladder-sparing modality that he had wanted in the first place, and "the team", which is about to grow bigger by some orders of magnitude, are clearly fanning themselves with relief because they were pumping megadoses of cisplatin into someone who, unbeknownst to anyone, was already at risk of stroke. This is in NO way a knock on the doctors at Big Cancer Center. With a disease that affects maybe one in two million people, most of them either children or Asian, why would you even THINK about it, let alone screen for it? In fact, that Big Cancer Center is a) able to turn on a dime, shift gears, and mix metaphors so quickly, and b) is going to be teaming up with Big Prestigious Hospital's neurology team makes us actually feel MORE confident in them. So all's well that ends well, we have what is essentially remission, and the radiation should clean up any pesky hidden cells that might be lurking. It's all good.

In the afternoon, off we go to the stroke neurologist, where Mr. B. passes with flying colors and a big brass band yet another bedside neurological test, topped off with another resounding chorus of the Announcer's Test. The neurologist confirms the moyamoya, but because moyamoya a) usually occurs in children; b) is usually symptomatic; c) usually occurs in women if it occurs in adults, he thinks that since we are looking at a 58-year-old white guy who is virtually asymptomatic, what we are dealing with is moyamoya-TYPE structures caused by garden-variety atherosclerosis, and prescribes a carotid angiogram.

Now, if you don't find the idea of a carotid angiogram terrifying, you either have been in and out of hospitals since childhood, or you are insane. So both of us spend the next few days freaking out in various ways at the thought of a procedure where they thread a catheter into your femoral artery, run it up to your carotids, and see what's going on. Dr. Strokes 'r' Us is convinced that what will come out of this angiogram is the need for an endarterectomy — an even MORE terrifying surgery that sounds like something Dexter Morgan would enjoy on a particularly bad day.

So after five months of dealing with a particularly nasty kind of cancer, and getting some preposterously unexpected but highly welcome good news, now we are looking at getting him through something even more terrifying. And this, my friends, looks like a good place for a cliffhanger.

Next up: Part II: Abercrombie and Neurosurgery, Hey Kids Let's Put On a Hospital, and Spicoli the Anesthesiologist.

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Blogger skywind said...
Forget the novel, please write a cancer memoir. Thanks for the morning laughs.

Blogger Jill said...
Wait. It gets funnier.

Blogger The New York Crank said...
Sincere sympathies to you and Mr. Brilliant. I hope you both get through and past this.

But heads up. The Crank's late Beautiful Girlfriend, herself an M.D. out of a top medical school, had a saying. "Hospitals kill people."

I sometimes wonder if it wasn't a hospital that killed her. All I can tell you is, accept nothing on the authority of one doctor, no matter how notable he is. And pay attention to see if the doctors are paying any attention to one-another.

Blogger Philip Paul said...
Where do you find time to sleep in this formula?

Good Lord Jill.

Glad to hear there is some good news in that giant mess.

Anonymous Syrbal/Labrys said...
Fucking. Hell. On. 4-Wheel. Drive. Damn, Woman, that shit keeps up you will need some of those hot and cold running nurses for YOURself. (Where DO they find the cold ones in the summer heat, anyhow?)

Courage, ice cream, and some rest to you, Jill.

Blogger Raksha said...
Wow, Jill...I can understand why this is the funniest medical post I've ever read anywhere. It's obvious that if you didn't laugh you'd go crazy. I'm surprised you haven't anyway. Your grace and wit under extreme pressure are truly an inspiration.

Here's wishing you and Mr. Brilliant the minimum of medical ordeals in the future, and after that a speedy recovery for both of you.

Blogger Batocchio said...
Thank goodness for the machine that goes Ping!

(Also, fuck cancer.)

Most of all, best wishes to you both.

Blogger jurassicpork said...
There was a time when George C. Scott's THE HOSPITAL was a hilarious send-up of American medicine. Now it's looking like a work of prophecy. Glad to hear Mr. B's prognosis is looking brighter than previously thought. God knows with what you'd been through, Mrs. B, you could use some good news.